Daily Archives: December 6, 2006

If I don’t look directly at people, and don’t listen to what words they are saying, I can tell a lot about their body language and tone of voice. So one thing I did when watching an interesting set of videos from the Judge Rotenberg Center, was look slightly away from the video and not bother to turn on language comprehension. The following is what I saw.

There were two people near each other, a woman on the left and a man on the right. When one was talking, the other was backing them up through movement. Their movements were coordinated with each other and sort of bouncing off and reflecting each other all the time.

The movements of the woman were quite often something I don’t know all the words for but know when I see it. There were some incongruous movements in there that were presumably to mask something or other. The rest of the movements and noises she was making were quite often to convey a sense of “I’m superior to these students, they are doing all these, sort of silly kid things, and I am laughing in exasperated tired adultness as they go through all these different things.” This is a knowing sort of movement, designed to convey a connection to the person watching it, sort of like, “We all know what this is like,” inviting the viewer to join in the knowingness.

The man moved in more subtle ways, but they conveyed precision and confidence, very much the way many psychiatrists or scientists move. He moved in such a way as to say, “We know what we’re doing, we do not even need to be forceful in arguing anything, because we know exactly what we’re doing.” His voice reminded me strongly of something a friend calls the “male human services accent,” and also conveyed a great deal of precision in the way that he pronounced words. Sometimes it acquired condescending tones, or his equivalent of the woman’s “knowing” tones.

The overall effect is, “We know what we’re doing, even you ought to know what we’re talking about a good deal of the time, and we agree with each other totally on this stuff, seen it all before. We’re not only in control, but it is only natural that we are in control.”

What video am I talking about? It’s called Why Students Complain To Families. It sets forth a set of expectations in parents for the meaning of their children’s complaints about the Judge Rotenberg Center, and asks parents to collude in the dismissal of complaints and the shaping of their children’s behavior to include fewer complaints about the JRC and more compliments. The two professionals in the video are Dr. Timothy Paisey and Dr. Patricia Rivera.

The video is broken up into sections: Introduction, Program Structure, Complaints chapter 1: the Structure, Complaints chapter 2: the Treatment, Complaints chapter 3: the Education, Complaints chapter 4: the Staff, Complaints chapter 5: the Program, Complaints chapter 6: My Things, Complaints chapter 7: Professional Staff, Complaints chapter 8: the Food, and Complaints chapter 9: Safety. Each section details precisely why parents are not supposed to worry about the complaints, and then describes ways parents can react to the complaints.

Some quotes throughout the video on this topic:

From the introduction:

Young people often make complaints about the structure of their school no matter what environment they’re in. The more structure and consistency that the school provides, the more the students tend to complain. (Dr. Rivera)

They argue that children, possibly emotionally disturbed children in particular, are natural complainers, and would complain no matter where they were. This is meant to bring up images of children at school complaining about the cafeteria food, or complaining about reasonable rules and limits set on their behavior. It’s meant to evoke memories in parents of their children doing these things, and to tie those memories to anything the children might say about the Judge Rotenberg Center.

From Program Structure:

And as many parents can attest, most students do not like rules. (Dr. Rivera)

Of course as a parent you may have experienced that yourself, in terms of trying to impose rules or structure. (Dr. Paisey)

These make the parents identify with the professionals at the JRC.

From Chapter 1:

In some ways, if the student is complaining about the structure, and complaining about the intensity of the program, they are complaining about the very things that are effective treatment for them. (Dr. Paisey)

Exactly. Or else they wouldn’t be here. (Dr. Rivera)

Absolutely. (Dr. Paisey)

This makes it sound as if any complaints are because of the student’s lack of understanding of what is good for them.

From Chapter 5:

Some other concerns that we come across quite frequently involve general complaints about the program. Students will complain that they are physically held or restrained for no reason, and they will claim that they didn’t do anything to justify or provoke this. They will claim quite often that their behavior contracts were broken, also for no reason, or for no good reason. (Dr. Paisey)

And usually the problem is that the students don’t connect their own behavior with the consequences or structure of the program that has been put in place for them. (Dr. Paisey)

And that’s where you hear the complaint of “Staff are too strict” or “I was restrained for no reason,” because they’re not initially making that connection. (Dr. Rivera)

Of course, being restrained and otherwise punished for no reason, and then having it written up otherwise, is an incredibly common experience in institutions. It is convenient for them to have such a facile explanation for the whole thing.

From Chapter 8

Now young people complain about food all the time, in fact young people complain all the time in my experience, about everything. (Dr. Paisey)

This is true. (Dr. Rivera)

So if they weren’t at JRC, they’d probably be complaining about different things in different places… (Dr. Paisey)

Actually, the JRC imposes a strict diet on the “students”, regardless of their prior dietary preferences, and while it allows “other food” sometimes (sometimes contingent on good behavior), this is still an unreasonable restriction.

Chapter 9:

Nonetheless we will have students who do report to families that they are going crazy, or that they are going to hurt themselves, or they’re gonna run away, or they will make claims that staff abuse them, or they will say that they have marks on their bodies as a result of a restraint procedure. And they will sometimes claim that they were hurt by other people on purpose. (Dr. Paisey)

Because things like this happen in every institution I’ve seen.

And here is the big one, the one that explains everything:

If you have a telephone call or a face to face meeting during a visit with your son or daughter and they make some complaint, the first thing to do, I would suggest is to ask yourself, “Is this one of the complaints mentioned on that video I saw?” And then perhaps that will guide you towards the next step, which might be to listen briefly to the complaint. If you can, try to minimize your reaction to it. You can ask for specific details, specific contents, briefly. And then move on. Move on to something more appropriate and positive. If you think you need more information, contact the case manager. (Dr. Paisey)

See, the first thing to do is see if the complaint is mentioned on this video. If it is, then obviously it’s not a valid complaint, or something.

But in the course of the conversation with your son or daughter, try to move on. The reason is because the attention we give to what our children say is itself a reward, it reinforces that kind of behavior. If we’d like to hear more complaining, then all we have to do is pay attention to complaining. If we’d like to hear more good news and positive reports, then what we could do, is to pay a limited amount of attention to complaining, and then move on, and ask “What has happened that is appropriate and positive?” And in fact, if you start by attending to the complaint, and then move on to the more positive information, over time, perhaps the attention to the complaint that’s less, and the attention to the positive information that’s more, and you can teach your son or daughter to pay more appropriate attention and emphasis to reporting positive news. (Dr. Paisey)

That is a description of using behavior modification to get students to say good things about the Judge Rotenberg Center. In other words, a form of brainwashing.

So what we’d like to do is to actually ask your help, in assisting us to teach these students how to do this. (Dr. Rivera)

And that makes parents feel as if they are doing something helpful for brainwashing their children.

We would encourage limited attention to complaints. We would encourage you to make a note of complaints. If you detect a pattern in the complaints, share that information with the student’s case manager, because then, if we need to, we could even adjust his or her program to take account of this. Those are some active ways in which families can become more involved in treatment and some active ways in which the student will not be able to manipulate others to cause the treatment that they truly need to stop. (Dr. Paisey)

Here, it talks about how they can adjust the student’s “program” to deal with the complaints. Presumably not to stop the bad things going on, but to stop the complaints, of course.

So, as you can see, one reason that students praise the Judge Rotenberg Center is that they have been, literally, systematically trained to say positive and not negative things about the place. (I have experienced similar training, it’s nothing to take lightly.)

“It’s hard to fight an enemy who has outposts in your head.” – Sally Kempton

I’m looking at a webpage with links to reports about human rights abuses in psychiatry. I could read these reports, but they’d just make me angry. Not the kind of productive anger that makes it easier to write stuff and change things, but the kind of futile undirected rage that would tear me up inside, make me kick doors and yell at my friends. I already know about these things, and don’t need to be reminded, but what we’re reminded of in the first place is selective. There are tremendous human rights abuses going on in certain institutions, yes, and they need to be fixed as soon as possible. But the nature of these reports worries me. They make it look like if you just cleaned up the walls, gave the inmates food and medical care, and stopped beating people, that these places would be acceptable. While these are basic human needs, meeting these needs does not mean freedom. It doesn’t even mean freedom from abuse.

Institution survivors are all too willing, sometimes, to share what seem like the worst of our horror stories. I don’t know about everyone else, but I do it because those abuses are the most tangible. It is easier to write about the mark of drugs and electroshock on the brain or restraints and beatings on the rest of the body than it is to write about the mark of the institutional environment and psychotherapeutic control on the mind. The former are solid and quantifiable; the latter are elusive, insubstantial, and sometimes more terrifying and longer-lasting.

I have a recurring nightmare. I am in a beautiful building with a hushed, playful atmosphere. I have been there as long as I can remember. Everything I could possibly need is there. There are no locks on the doors. People follow me everywhere, but just out of sight, to give me the illusion of freedom. They want only the best for me. I can go outside and play in the woods, and I climb trees. And they treat me like a child. Everything is controlled perfectly. Nothing seems to be wrong, but nothing seems to be really right, either. Everyone is very sweet and very kind and very nice and very forgiving, but there is no freedom. Anywhere. This makes the apparent happiness of the place empty, shallow, and false. That, to me, is the essence of the intangible horrors I fear. Only when I wake up from this nightmare do I realize it’s a nightmare, and that in turn makes it all the more frightening.

I was forcefully reminded of the less tangible aspects of institutionalization last week. During a period of flashbacks, the wrong person heard I was having trouble. I spent the night and part of the next day in a psych ward before I could, along with my support staff, convince them that I was better off out here. If I weren’t in the developmental services system, I might have stayed there, but psych wards don’t like dealing with people with developmental disabilities. All the real but unquantifiable horrors came rushing back at me even during that short stay, and they need to be documented just as surely as the tangible ones do.

I wish I could be the one to document them extensively. I’ve tried, but whenever I do, the words slip away from my mind and I’m filled with an uneasy dread and the smell of that place. I’ll try as much as I can — both things from that place, and elsewhere — in list form:

Control.

Infantilization.

Constant monitoring.

Fear of staff because of what they could do, and inmates because of the staff.

Smells.

Screams.

Begging for basic items, and for “privileges” that those outside see as rights.

Everything you do, say, and think being put in psychiatric terms (“No, no, no, I’m not anxious for my meds, I just know that being late on that one gives me migraines, and I don’t know anyone in the world who likes migraines.”)

Separation from everything and everyone familiar.

Not being allowed my own staff, advocate and cognitive interpreter (whom I have a right to under the Americans with Disabilities Act as surely as a sign language interpreter), watching her have to fight to get in outside of visiting hours.

Having people control when, where, whether, and how I can speak to familiar people and advocates.

Discouragement of bonding among inmates or between inmates and staff.

Catch-22 on displays of emotion — every emotional display has a corresponding psychiatric label, but a lack of emotional display is considered a sign of depression.

Being told what you’re “really” thinking and feeling, as opposed to what you are thinking and feeling.

Having your motivations constantly questioned and scrutinized.

Backwards language: ‘Getting with the program’ is a ‘good step toward independence’, but making your own decisions is ‘non-compliant’, ‘manipulative’, or ‘attention-seeking’.

In this case, some of staff’s inability to grasp that I was genuinely abused in previous settings and I didn’t just think I was (I told the near-death horror stories when asked; I knew they wouldn’t understand the subtleties), and that it was mainly staff, not inmates, who perpetrated it.

Assumptions on the part of staff that if abuse was perpetuated against me in the psych system, then it was my fault, and asking questions about what I had done to cause it.

Condescending chatter from staff who think they’re being nice but who’ll become suddenly grouchy if you show any sign of not liking it.

Trying hard never to be noticed, ever.

Knowledge that whether I stay or go free is contingent upon other people’s desires and other arbitrary factors, and that false reports can easily be written and justified.

Knowledge that my housekeys and wallet are in a locker in the nurse’s station.

Fear of thinking one’s own thoughts or feeling one’s own feelings, and constant questioning of whether they’re real or delusional.

Fear of speaking out, feeling — and sometimes being scolded — like an ungrateful child if you do.

Being patronizingly told of the seriousness of your actions or thoughts, as if you’re unaware of this fact.

Knowledge — from previous experience — that if I stay too long, I will have to either kill all desire for freedom; or go berserk, violent, and self-destructive and risk dying or being kept even longer.

Knowledge that most of the world still condones this, either overtly by calling it ‘treatment’ and ‘necessary’, or by never having to think about it.

Control.

Control.

Control.

The defining element here is control. If you strip away the abuse and neglect that is considered more obvious, there are other aspects of institutions that can be much more insidious. The idea of staff control over so many aspects of inmates’ lives — no matter how benevolently constructed — leads to a situation in which the inmates will feel controlled. And rightly so. The problem is that in many of these environments, the control is so covert, ever-shifting, and confusing, that the inmate may doubt that there is control going on at all. If you are beaten, you know you are being beaten. Mental and emotional abuse — intentional or unintentional — can be strong and subtle at once.

You start to doubt yourself. You believe these people are doing you a kindness, and some of them sincerely believe that they are. All your schooling in the value of good intentions comes into play, and you find yourself wrestling with whether or not it’s okay to object. People are always there. They are too there, too eager to be of help. You wonder harder, “Are they hurting me? Or are they just being nice?” The concept that they may be hurting you while trying to be nice to you is hard to grasp, and once you do grasp it, you don’t know what to do with the information.

That is only one of the best-case scenarios. Many people aren’t even trying to be nice.

These things don’t describe it adequately, but they’re better than nothing. This doesn’t get into many of the details, and many of the long-term effects. There’s no easy way to describe the way these things encroach on your mind, to anyone who hasn’t been there. I’ve lived through the traditional horror stories, the ones that are, paradoxically, easy to talk about. I can get used to saying that they almost killed me, and if I harden my mind in the right places I can describe how.

But how can I get used to saying that they trained me into ways of thinking, degrees of self-hatred and self-denial, that, without diligence on my part and support on the part of others, could come close to killing me every day of my life for the next seven years or more? This is where the outposts in our heads come into play. We are trained in these destructive ways of thinking, by both well-meaning and cruel people alike. One of the most dangerous thoughts among them is the belief that these thought patterns are just about anything — ‘delusions’, ‘organic psychiatric disorders’, ‘signs of pathology’, ‘manipulation’ — as long as they are not the responsibility of the people who teach ‘patients’ these ways of thinking. But one of the most important things to learn is that it is their responsibility. These mental outposts that destroy so much of people’s lives are not the fault of the people whose lives are destroyed. They are the responsibility of the people who perpetuate them and the systems that support them.

These things are, of course, difficult to say. I have to fight my training all the way, and for someone with a lot of Special Individualized One-On-One Training ™, that isn’t easy. I can, as I type this, almost hear the words of my psychotherapists in my head: “You were delusional. We were desperate. We thought we were going to lose you. If you get paranoid about things like this, check them out with me.” That last sentence is the catch. I have checked out my observations with other people, and they have been confirmed several times over. I was taught not to trust my own thoughts, but now my thoughts are confirmed. This is not a delusion. This is hard, scary reality. And it’s a reality that I can think for myself. I don’t need a psychologist hanging over me telling me that my belief that he is abusive is a delusion and an exaggeration. But I have to fight the “Don’t think for yourself” training I got all the way. I was told that my psychologist would get in my head and never get out — that he would build these outposts in my head — so that I would be sane. It seems to me that the sanest thing I ever did was start kicking him out of my head at the earliest opportunity. But he holds on tight, and sometimes it’s hard to defy him even though I haven’t spoken to him in years.1

The things he told me are confirmed by the majority of the culture around me. People believe that some people — sometimes me, sometimes not, but it doesn’t matter — need to be treated as I was treated. There are entire books written on miracle cures like me, books that make my blood run cold because they look like the therapist manipulated the patient until they acted a certain way. Just like me. These books sell a lot because people like that this happens. The brilliant therapist saves the incurable schizophrenic (or multiple personality, or autistic, or whatever) from a life of certain institutionalization. People like my abusers are considered heroic. People like me are considered weird bags of flesh without real value until someone comes along to give it to us. Then we are supposed to feel grateful for the abuse that has been heaped on us. People tell us where we would have been without it — sometimes it’s true, sometimes it’s not, but it doesn’t matter — and think that anything less than fawning gratitude is a sign that we’ve still got problems.

Difficult as it is, someone needs to talk about these things. Maybe not everyone, certainly not anyone for whom it’s simply too painful or dangerous to think about at the moment. But it has to be someone. Otherwise, we will succumb to the belief that cleaning up institutions makes them humane, that changing their outer trappings makes them no longer institutions, and that mental and emotional invasion and abuse only happens in a few isolated cases. An institution can be the size of a single room, and can take place even under the guise of utmost kindness. To paraphrase a friend, the restraints they put on our minds can last for long after our bodies are untied and sent home. We must not forget this, or those who come after us will live in the clean, beautiful, sanitized hell that haunts my nightmares.

I began to write this in July 2003, shortly after a stay in a psychiatric ward brought on by the wrong people hearing the wrong things and my own trained submissiveness that made me go along with something I should have fought. I finished it in October 2003.

1 This particular institution he worked at was one of the remaining holdovers in the mid-90s of the era when autism was a part of the nebulous and fairly useless label schizophrenia.

Comments from when this was a page not a post:

Alliesays:

February 8, 2007 at 4:50 am

Thank you for writing this. This has made me think a lot about the two months I spent in a psych program — gods, has it been almost three years? For all that I don’t always like to think about it, and in fact often have nightmares about being back there when I put too much thought into it, there are things about my experience that I just realised, and some that I just was able to conceptualise or put into words, now, as I read this. This tells me that more thought is required, and that maybe the reason the nightmares come back is that I’m not done processing what happened and haven’t figured it all out (ha).

I’ve been reading your blog backwards, having just found it today, and it’s astounding to me. So many things you write make the aha! light go on in my head. And (this one may sound like a really small thing) when I joined the ALF Second Life group, the fact that is was the first autistic group to mention my diagnosis in the description moved me greatly.

I guess I’m saying, in a rather overemotional way, that I really appreciate what you’ve written, and want to thank you. I will be reading.

I know you posted this ages ago, but I thought I might comment anyway…

I think I know a little about what it’s like to be in an institution. I spent my childhood being pinned to the floor by various abusive stepfathers… then I went to a “college” that was really a cult (think complete control–never alone, anywhere; cameras everywhere; everyone reporting on everyone else; You Must Think This Way…). Aspies are unfortunately quite gullible when it comes to cults… And then there’s the time I spent in the mental ward, a total of two weeks but enough to wake up all the memories of abuse and control and have them rushing back again.

I agree with you wholeheartedly: It really is the control–the way they get in your head–that hurts you so much more than anything physical. The body heals in a straightforward way; sometimes it leaves scars, but eventually it’s healed and that’s it. But the mind… Once you let them control your mind, that’s it. You start to lose who you are, lose your identity. Once you start to believe what they say, you lose the only scraps of freedom you have in such situations. It’s imperative to keep your mind your own–just a little part of your mind, if you can’t manage all of it; just a token, symbolic resistance to tell yourself, Yes, I’m still me; I’m not their puppet yet.

Such an environment would be hurtful to a psychologically healthy person. But by the time you are in a mental ward, or an institution, you are usually suffering from PTSD, depression, anxiety, et cetera… not to mention physical problems and the results of overmedication… It’s surprising that anybody gets out of those places with any bit of sanity left.

By the way: PTSD sucks. But with time, it begins to fade… One day, you look at the world and realize you’ve finally made peace with those experiences, made them a part of your past; and that you’ll never quite be the same, but you can live with that, too.

k1maplewdsays:

September 20, 2007 at 12:35 am

OMG. I am high functioning autistic with some psych issues as well. Everything you say about the institutions and psych wards is so true. I was in McLean at one point getting ECT (shock therapy) because they didn’t know what else to do with me, but insurance wanted me out and if I didn’t agree I was most likely going to a state ward. So I agreed. That was 3 YEARS ago I’m still dealing with reprocussions from that. Thank god I have a therapist now who will go to the ends of the earth to keep me OUT of psych wards. Because he knows how much worse they make me.

Philipsays:

October 29, 2007 at 10:08 am

Expressed emotion (EE) is a term used to describe the emotional attitude of relatives or psychiatric care staff to mentally ill patients. High expressed emotion is shown by a high rate of critical comments, hostility, emotional over-involvement (as reflected by extreme emotional reponses by the relative or staff and over protective behaviour towards the patient). Low expressed emotion relatives and staff might be described as being laid back.

Recovering patients living with high EE relatives or psychiatric staff are exposed to constant stress which results in emotional distress. They are especially likely to relapse.

A study in Britain published in 1992 of two hostels for recovering patients, in one of which the staff were high EE, found that the patients were more likely to leave the high EE hostel. A study in Los Angeles, published in 1994, found that patients living in a residential care home with high EE staff had a poorer quality of life and worse symptoms than patients living in a low EE environment.

Larrysays:

November 25, 2007 at 6:24 pm

Amanda, have you ever read the French philosopher Michel Foucault’s “Discipline and Punish”? It is right up your alley, but he unmasks the disciplinary nature of the whole of modern society itself.. Here’s a readable link to a review of the book. http://www.geocities.com/athens/agora/9095/carceral.html

bargedwellersays:

January 20, 2008 at 10:58 pm

Have you heard of the Rosenhan experiment? Eight people pretended to hear voices but without any other symptoms tried to get admitted to various psychiatric hospitals. All eight succeeded. None were detected as fake during admission, but other psychiatric patients identified them as fakes.

When admitted, they all acted normally, but their actions were interpreted by staff as pathological, e.g. taking notes was labelled “writing behaviour”.

The second half of the experiment was carried out when another hospital heard of the results but said they would not make that mistake. Rosenhan said that he would send some fake patients to them to test this, but actually he didn’t. This time the hospital said that 41 of 193 real patients were impostors and a further 42 were considered suspect.

Re, Rosenhan experiment: The second half of the experiment (where real patients were falsely identified as “imposters”) reminds me of a story that Amanda posted somewhere in this blog site from a woman who had repeated trouble getting help from the system, despite very obvious difficulties in taking care of herself, because doctors etc. kept saying she was simply seeking attention etc. I couldn’t remember enough detail to find it again or else I’d reference it — I think it’s one of the older posts here.

Jen Birch had that experience, because during her stay in the psychiatric ward they diagnosed her with ‘factitious disorder’ and later when she needed help she was refused it based on her diagnosis (which means ‘faking signs of mental illness for material gain’).

Yeah, although that’s not what factitious disorder means, you’re thinking of malingering. Factitious disorder means faking it without doing it for material gain (because you just like the idea of being sick or something). She was badly mistreated in that psych ward, and she’s one of the people who wrote about emotional and mental abuse in those places instead of just the physical violence.

No, it’s “Autobiography of Anonymous” the person is referring to, which is somewhere on autistics.org. The person was having serious trouble functioning, but they were blacklisted for healthcare everywhere because someone diagnosed them as a sociopath, which is a growing problem in the UK apparently (to diagnose people with personality disorders so nobody has to help them). And one of the readers of this blog was a psychologist who had lived in the area this person was from, and they confirmed that all her crappy experiences sounded exactly like what someone from that area would encounter.

Sadly, what you describe as your own experience, is not unknown to a lot of “normal” women in their pregnancy and childbirth experience. I think it’s just the way the medical community has to treat people. They cause excrutiating pain and tell you “I know that’s uncomfortable”. They do genital surgery on babies and say “He won’t remember it” and never stop to think that *he* has to live with their actions for the rest of his life…they don’t. They tell you whether you can eat (usually not), whether you can have a chip of ice, stick IVs in you, put you on the clock…if you don’t perform in time, they wheel you into surgery *even if everything is fine*…”just in case”. In most places now, if you’ve ever had a c/s birth, even if you’ve had subsequent VBAC births, you are forbidden to VBAC…”just in case”. Yes. It’s horrible. It’s not limited to your population or any population. And of course….it’s all for our own good. :P

She said that she could not have written the novel if she had not spent almost a third of her life as a patient in the psychiatric system.

She describes her experiences in a north London psychiatric day hospital: “every few months you had a ‘Case Review’ which you weren’t allowed to attend, except for a few minutes in the middle when they called you in to answer questions in front of an audience of staff and students. This was where I heard my thoughts described for the first time as ‘voices’; where my actions ceased to be my actions and became instead symptoms of something bigger, something diagnosable.”

In the hospital common room “there was a hierarchy, a code of behaviour, alliances and long-running feuds, the origins of which were often forgotten.”

The common room also had its own culture, which “like cultures everywhere put pressure on its members to conform”, and conforming meant acting mad.

Um-um-umsays:

April 8, 2008 at 8:51 am

This piece offers wonderful insights to the less obvious problems with our society, methods of medicine, schools and treatment of not just the “special needs” population but everyone. Thank you for standing up and speaking out.

My son is PDD/NOS non-verbal… brilliant, an excellent communicator and has always shown great judgment. His mother has secured for him the best in therapy (at a cost ranging into the millions). Yet he would agree with your observations. The saddest part is that although the armies of specialists and “therapists” are well trained and well meaning (yielding benefit of any doubt), the consistently fail to recognize who he is! Yes they know his behaviors and create mountains of regurgitated psycho-babble (that often look more like a cut and paste of another student’s report), but they do not know him or at least do not respect him.

Years ago I tried to work with the school on these kinds of issues. They got defended and then behaved bizarrely. After hours of discussion of negative behaviors (some very disturbing and injurious) they refused to tolerate a question (after the meeting was officially over) about the word happy on the first page of his IEP. Given a dozen pictures of bites, bruises and such, only enraged them. I walked out and now consider that organization (perhaps one of the most respected on is it’s field)… I now consider the school very poorly.

Many years ago, at a conference, I asked a guest speaker (autistic, shy and not an experienced public speaker) a question. If you could send a message back in time to your parents and teacher, what would you say? She struggled with the complexities of the question, but in time announced fervently, “WE KNOW MORE THAN YOU THINK WE KNOW”!

This statement is the corner stone of all of my thinking on the subject. I try to look to see who someone is and not what they may not be. It seems common sense, but then that seems to be a lost art as well….

There was once a ray of “therapeutic” light, a PT that seemed to work miracles. I watched many sessions and did not get why he did so well. At school he would struggle to show any progress, yet there he learned quickly, was immediately compliant, always did well, gladly took risks and was in a word happy. In conversation with the therapist she admitted that he did not have any physical disabilities (evident), but the sessions were paid for and he had a rigorous schedule (40 hours of ABA or it’s ilk every week), so she took the time to let him relax and play.

The idea that play is essential to growth is common sense and advocated for by many experts, notably in T.B.Brazelton

Um-um-umsays:

April 8, 2008 at 8:56 am

[Hmmm – a word limit – continuation from previous post]

The idea that play is essential to growth is common sense and advocated for by many experts, notably in T.B.Brazelton’s “floor time”. I always felt that playing was a core port of life and have since set it as another cornerstone of all considerations, regardless of the topic. Play needs to be always part of our lives.

What message would you send to your “therapists’, teachers, doctors and parents?

[…] inherent awfulness before, over at Ballastexistenz. Looking again, I must have skimmed over her Outposts In Our Heads post before, because it was just too uncomfortable. (I felt like I was going to have a heart attack […]

“Defending Illusions: The Institution’s Struggle for Survival” is an account of how in the early to mid 1970s, in response to outside pressure, institutions for the mentally retarded in the United States, formerly called state schools or state hospitals, changed their legitimating myths and renamed themselves as developmental centers, regional centers or education and training centers. Legitmating myths are an organisations goals and structure which they present to the outside world to gain support from public groups.

The change in name is epitomized by the renaming of the notorious Willowbrook State School in New York, to Staten Island Developmental Center.

The three legitimating myths of institutions for the mentally retarded were tradionally as follows:

First, they were “designated as education and training centers for people who are mildly or moderately retarded. Education and training have been defined less in terms of academic instruction than moral discipline and hard work, including caring for the severely disabled residents of the institution. Second, institutions have found legitimacy in providing custodial care for individuals labelled as severely and profoundly retarded and/or mentally handicapped. […] Finally, institutions for people with mental retardation have been justified as agencies of social control.”

In response to public pressure these instutions changed their goals, structure and vocabulary.

Examples of changes in vocabulary:

“Facility name: State school or state hospital to developmental center, reginal center, education and training center.

However these institutions are still total institutions. “For residents, daily life is routinized and regimented.

Visitors to these institutions seldom visit the back wards.

The offials of the instutions now use the rhetoric of individual rights and personal growth and development. However “the rhetoric of rights may be used to account for a failure to provide residents with programming or encourage them to act in socially appropriate ways.”

Sarahsays:

August 29, 2008 at 5:53 pm

Hmm, I cannot (fortunately) imagine what it must be like to be in any institution, let alone what you have described. What came to mind was also the Rosenhan experiment, I remember reading it in a text on the theory of perception of mental illness.

What really stuck in my mind was how even the most ‘normal’ behaviour can be perceived as devious to social norms in settings such as a mental institution.

[…] kept melting down and getting thrown in psych units*. (If you haven’t already, take a look at this post over at Ballastexistenz. It gave me flashbacks.) E. didn’t understand so well when I started […]

The truth about my life is, to me, straightforward. But it is also, as it is for most autistic people, unusual. It has a couple of points in which I’ve traversed some developmental trajectories that are unusual even for autistic people — although not as unusual as I’d expected. But I am still afraid whenever I tell anything but a few parts of the truth about my life.

I have spent a good deal of my life institutionalized in one form or another. First I was institutionalized in the ordinary way most American children are institutionalized, which is to say I went to school. School is a surprisingly good training ground for the next kind of institution I wound up in, the kind with locks on the doors, Thorazine, restraints, and seclusion rooms. After that, I was institutionalized in ways that, while the power dynamics were exactly the same, took place without locks on the doors. These last places not only presented the false front of not being “true” institutions (when in fact they were), but left me permanently uncertain about when, if ever, I was let out of institutions for good.

I have spent a good deal of my life, within all of these settings, being told who and what I am. I have spent a good deal of my life under the direct control of people who told me who and what I am. These people have had absolute power over me up to and including whether I live or die. They have told me that I am not thinking what I am thinking, feeling what I am feeling, or experiencing what I am experiencing. They have looked at my outsides and filled in the gaps with their own prejudices, then tried to force me to conform to their prejudices. They have trained me to second-guess every thought in my head, to say that true is false and false is true.

Whenever I speak about the day-to-day reality of my present life, or certain aspects of my past, ghosts come out to haunt me. They feel real. Sometimes, with the help of flashbacks, they even look or sound real. Sometimes they superimpose themselves over real people, people I know today who believe in me.

I see the classmates who bullied me, especially the girls who did things to me and then later told me (and of course teachers) that they’d never happened. Relatives and ‘friends’ who abused me, or who didn’t know me that well and made their own assumptions. Mainstream and special-ed teachers and principals with their agendas for me and their narrow and conflicting views of my abilities and impairments. Counselors, psychologists, and psychiatrists with their views of what my mind was “really” like and what I should do about it. Psychiatric nurses and psychiatric technicians who wielded control over my life direct and total enough to corrupt nearly anyone, and with the insulting and inaccurate motivations by which they were trained to interpret my behavior. Doctors who told me that my internal experiences (including non-verbal thought), by virtue of not meeting their expectations, were completely invalid and impossible. Autism “experts” with their own ideas of which parts of autism I should be concerned about (social skills) and which were just me being lazy or willful (everything else). Random people who told me that communication is impossible for an autistic person.

Without fail, these are the people who appear in my head every time I write an article for public viewing. The closer I get to the real truth about my life1, or to living my life the way that best suits me, the stronger these voices out of my past call me a liar. I have nightmares about them. They tell me I’m too crazy or dramatic to understand myself. They say that documented events never happened. They threaten me, telling me to shut up right now or else.

This mirrors exactly the times when they, in their real-life people forms, asked me what I was thinking, I told them the truth, and they told me it was a lie, or that I lacked insight. Then they told me to say something that I knew was a lie but call it the truth. They told me they knew me better than I did. They had a lot of power over me then. They don’t now. But I am well-adapted for a time when they had power over me. If I weren’t, I wouldn’t be alive to describe it. My fears mirror the strategies I learned for survival — telling the truth is dangerous.

Perhaps because of this exact phenomenon, my heart rate is skyrocketing just writing this down. But someone has to document this. This is the kind of damage that is done to people all the time, the kind that messes with our minds rather than our bodies. It is the hardest kind to write about, and thus is often not written about in detail. It is intensely personal and by its nature evokes an extreme sense of vulnerability.

There are other people out there who have experienced this kind of total domination. There are autistic people who cannot write the whole, non-stereotypical truth about our lives because terrible things will happen when we do2, or because terrible things happened when we did in the past. There are institution survivors who can write about being beaten up by staff but who freeze up completely when we attempt to write about the domination and invasion of our minds. It is so much easier for many of us, in comparison, to stick to the stereotypes. Or the more spectacular but often less invasive physical torture we’ve endured. Every one of us who breaks this pattern is taking a tremendous risk, either in our minds or in present reality.

It is important to know that when you read something by someone who’s a member of a group that’s been dominated and oppressed as heavily as this, you may be missing the whole story. Particularly if you’re one of the people with power over us. This is not out of deceitful natures on our part, but out of terror of what will happen when we reveal certain things. It is important to know that some of those of us who appear to approve of horrible things that were done to us, are people who are afraid — sometimes legitimately afraid for our lives — to say otherwise. Or worse, many have forgotten how to say otherwise, or have only been taught to communicate in ways that validate those who have harmed us. How many communication “interventions” for autistic people teach us to say “No” or “You’re wrong”?

It is important to know that uncounted people are suffering in silence while dominated by people (regardless of intentions) who have belittled us and called our every truthful word a lie. They may look calm, compliant, cooperative, and happy, but under the surface be terrified or secretly defiant. I remember all too well a day when my life was threatened. The Orwellian language of my psychiatric records describes it as a day when my compliance level started improving. For my part, this was the point at which I gave up all hope and cooperated out of fear and despair.

It has taken years to get up the courage to write this. I have tried several times and ended up curled up in a ball on my bed crying or banging my head on the wall, surrounded by the ghosts of psychiatric nurses. Often after only writing the first sentence. I don’t know what has made me able to write about it tonight, but I’m taking full advantage of it. I want people like me to have words and concepts for what has happened to us. I want other people, particularly professionals, to understand the damage they have inflicted and may still be inflicting on us. I want to be another person to break the silence around the things that are harder to describe and harder to endure. I want to defy the people I fear the most.

Writing this is part of my commitment to the truth, and my efforts to conquer the hold of these attitudes — not only on me, but on all the other people who are trapped within the mental prisons others have created for them. Now that I am free of these people’sdirect control over my life, I feel an obligation to speak up for people like I was who are still under that level of control, and for the truth that other people have forced them to bury.

Our lives or circumstances may be (or seem) unusual, but that does not give anyone the right to force us to lie and pretend that we are someone else. It does not give them the right to redefine the truth about us to reinforce their power over us or their stereotypes of what our diagnoses dictate we should be. It does not give anyone the right to inflict the kind of mental torture that leaves a lot of us begging for something as straightforward as a simple uncomplicated beating.3

1 Particularly the truth that says “This happened” when people want me to think it didn’t; or the truth that says “I can’t do this” or “I can do this” when people have thought otherwise in the past or when it’s an ability that has changed or fluctuated over time. These are all things that other people have strong investments in not being true, for some reason, and they have therefore tried to create in me an investment in not telling the truth about them. This also extends to asking for certain kinds of assistance or refusing other kinds of assistance.

2 As long as services, formal or informal, depend on meeting a very narrow, stereotypical set of traits to a degree that no person truly meets, many will continue to have to hide the traits in themselves that are not stereotypical, in order to survive. This creates a self-perpetuating cycle in which service providers require stereotypes, people hide non-stereotypical attributes (which every last one has), and stereotypes are perpetuated. Autistic people who can talk or type independently, and/or who were diagnosed after the age of three, and/or who scored over 70 on an IQ test at some point in their lives, are at high risk for being excluded already regardless of need, because those are non-stereotypical attributes in themselves.

3 This is not intended to be an endorsement of physical violence. Physical abuse is horrific and needs to be stopped just as much as what I’m talking about does. But many of us find it as taken on its own, as long as it doesn’t kill us, easier to recover from than the more mental forms of torture and coercion and the resulting thinking patterns.

Old comments from when this was a page not a post:

santosh pandeysays:

December 12, 2006 at 6:37 am

we should be optimistic in our own thought regardless of what

other says.if we dont’t have the will power to consume our effort

on our truth thought we will be missing.

u will be always admired

tektrixsays:

January 27, 2007 at 7:32 am

As with any strict doctrine of thought and/or practice, there are many things that traditional psychology and psychiatry cannot explain. Often times these flaws, in a particular practice, go unseen by the ‘experts’ and the novices are taught to discredit any knowledge that conflicts with the strict teachings…and thus potential knowledge gets lost in someone else’s personal truth. In other words, people are extremely close-minded, generally speaking, when they let one belief system or doctrine govern their powers of thought, reason, conclusion, and logic. The experts, with their myth of objectivity, often tell others that their view is incorrect for a reason that basically amounts to the teachings of some college, book, or other traditional education.

Time and time again, it seems as though the ‘experts’ are the ones that are too educated, in the traditional sense, for their own good. Why is it that even the best of theories, belief systems, or doctrines can really only explain about 90% of the great mysteries? Certainly I have my theories on why, but I have no way of being 100% sure. To this day, I still cannot find a straight-ticket way of thinking that explains all that I, and others, experience. Sometimes I cannot explain some of the things that I experience. Even in moments of absolute certainty, I later reflect and find a reason to doubt my previous conclusion. It’s not to say that I am doubtful of myself, but I do try and develop personal truths that seem very accurate to me…and I hope to find more accuracy after gaining more knowledge and reconsidering such views. I’m not so sure that there are any absolutes in this world, universe, life, or otherwise…although saying that there are none at all would be an absolute view in itself.

I could go on and on about the thought that run throughout my mind throughout every hour of every day, but I’ll instead move into how this might relate to you and I. We live in two seemingly different worlds, at least that is what the experts would tell us. I, being what they would consider ‘normal’, cannot fathom in a truly accurate way what it would be like to be autistic. That is the difference between the experts and me: I don’t try and act like I know everything. Judging from your writing, you are very smart…at least in my view. Traditional I.Q. and intelligence tests might say otherwise, but it is my personal view that each person has their own (sort of) reality and thus each person has their own unique thoughts and thought processes. That is why psychology and psychiatry ultimately fail at explaining a lot of things — the strict rules comprised from past experiences and cases cause the experts in these fields to try and apply what was the case with one person unto someone else. I think that the only difference between a psychiatrist and its patient is that one can help the patient, but the psychiatrist is beyond help. In other words, they are the ones that are so caught up in some pathological world that they cannot possibly fathom a different form of thinking other than their own. These people, in my opinion, are dangerous because they will try to strip people of their individuality through extreme force and next thing we know the patient is worse off than they were before being ‘treated’. It seems as though modern medicine, mental health clinics, and public schools are designed to strip people of their outward expression, their creativity, and their individuality. Judging from your story above, I don’t need to tell you that.

I guess the whole point of this is to say that there are ‘normal’ people who think very different in their own light…but they do so in an introspective manner (typically). It is socialization, from what I can tell, that teaches people to not express themselves in full…and I find myself disagreeing with the practice more and more.

People see you as a physical body with a disability and label you with their ‘suiting’ title of “autistic.” It is almost a form of objectifying a person and letting everyone know that that the person is not ‘in’ with the ‘real world’ which some call society. It is my personal view that seemingly abstract and unique ways of thinking are actually forms of progress for the mind. If one hallucinates then they are labeled as crazy…but if one had, or learned, control over such hallucinations then it could be a very useful tool.

I may not know you personally and I may never know you personally, but I do believe that you have a very great potential within you that many others cannot see…for they rely too much on what their conventional sense and experiences tell them. Perception is how most people gain knowledge, and it is a very subjective experience. It is my personal view that objectivity is a myth. In other words, there are only personal truths rather than absolute truths…at least that is what I have seen so far in my 18 years.

You might disagree with a lot, or all, of what I have said in my long comment (and I do apologize for its length) but I figure that I should at least offer you a long reading about my thoughts since you offered me, and everyone, one about your thoughts.

Many thanks.

mamallmightysays:

February 2, 2007 at 9:47 am

Please try to think you are perfect the way you are and unique in your own way too. It is so sad to find out that the nursing and medical personnel really don’t know everything about the human body and the working of the brain. Check out the website of Barbara Brennan who has a school that teaches about the energy field of the human body beyond the teaching of the medical schools or check for the word Reiki and Chakras on the net and you will find a new way to live!!! Good luck and be happy with yourself.

I work with autistic children, and am so afraid that I may be doing some unintentional emotional damage to them. I hate the structured way we are told by specialist to teach them. I don’t know if they are right. All I know is that I would go crazy if I had to go to school everyday learning and listening to what we make the our kids learn and listen to.

I try my best sometimes to the dislike of my fellow educators to not stick to the the way “Behavior Specialist” feel people with autism should be treated when they act out. Or to tell you what “I feel” a particular action may mean. This is especially difficult when a student acts out in a aggressive manner. It can be very hard, and frustrating at times. This is only because I care so deeply for my students. I don’t want to tell them how to feel or what to feel. Yet I can only guess and hope I am getting it right. I often tell them that “I am not sure what you are feeling. You are angry is my best guess. I’ll give you a moment. If I am wrong please forgive me.” I walk away and leave them to their thoughts. I hate it when others tell us to respond with “your body is telling me you are angry, and that you need to calm down. Go sit in the consequence corner.” Am I wrong? Are they wrong? I don’t know…….

I do care so much though. This post has helped me understand a little more of what a child may be feeling.

Thank you!

sdgsays:

February 24, 2007 at 9:23 am

What a great video and great information on your web… Keep it up… I have nephews that are autistic and I found this very iformational.. Thanks for the insight into Autism

Peter Hoeffelsays:

March 23, 2007 at 6:55 pm

Amanda,

I was forwarded a link to your video “In My Language” and I have’t been so moved in a long time. I am an advocate for people with disabilities and have a disability myself. I work for Disability Rights Wisconsin and was wondering if there is anyway I could get a DVD or VHS tape of “In My Language” to use in our trainings. I would pay for it of course. Please let me know.

I just found your website because they showed your video at a SCIP-r training I took this week. I am an employee at Autistic Services International. I was wondering what kind of advice you have for those of us trying to assist the autistic individuals in our communities.

Our training was completely focused on using the “Least Restrictive” techniques. And avoiding intervention at all cost. Everything that we learned in our training went in line with everything I have read on your website.

I thought you should know that there are organizations and people out there who are truly focused on “Independence, Individuality, Inclusion, and Productivity”. Which is what every human being deserves.

I will be working in a residence with 4 “high functioning” Autistic Males in their early twenties. Any insight would be fantastic as I am excited to meet these new people in my life.

I don’t know if Amanda intends to respond to you directly. But in the meantime, you might want to start by following some of the links shared by Ballastexistenz readers at http://ballastexistenz.autistics.org/?p=317#comments — it’s a long comment thread and people left a lot of link ideas (some right here at Ballastexistenz, some elsewhere).

A long post that discusses “do-gooderism” with many links to further essays and discussion — put aside an hour or two to pursue all the working links (a few are now broken, but most still work). Key for any person considering entering any so-called “helping profession” or who already works in one, whether or not you necessarily work with autistic people.

But also check out links provided in the comments thread I point you to above.

As a developmental therapist/early intervention educator who works extensively with spectrum differences, I deeply honor and respect what you have to say. It takes tremendous courage and beauty of the pen beyond decription. I have only this to add. Until us so-called “neurotypicals” learn the art of humaness and compassion and in the process become more empathically receptive, meeting, understanding and exchanging different ways of seeing/being/feeling the world and in that process lay down the gauntlet of stereotypical demands for wholesale compliance under the embarassing and simplistic banner, for example, of “school readiness” we will continue to perpetuate horrors in the name of “objectivity.” In that deplorable displayed lack of “theory of mind” (empathy – or properly functioning mirror neurons) we will continue to enslave others not only on the BROAD BAND of NEUROTYPICAL differences but ourselves of which we are but an ephemeral glimmer. Neil Samuels

meerasays:

August 27, 2007 at 9:57 pm

I feel incredibly moved by your courage and the truth in your article. Although I have no direct link to a person living with autism, I feel a kind of kinship, as a trauma survivor; I do not understand the changes in perception and the neurological overload that I seem to experience on a daily basis–and have no real vocabulary to speak about it. No one seems to understand what I am experiencing. I feel drawn to reading and learning more about people with autism, because I feel like I can relate to something about or I can learn something about what is happening for me. I can empathize with the difficulty of living with perceptual difference in a world that is so intolerant of difference and so lacking in understanding. If you know of any resources you can recommend to me I am trying to learn more about differences in interpreting neurological stimuli.

Jennifersays:

November 20, 2007 at 10:04 pm

Amanda,

I think you’re amazing and courageous. Thank you for some insight into what having autism means for you. I am a speech language pathologist and all I know is that every person with autism is different just like every person without it. I hope your days of being threatened are over. If I can ever help, don’t hesitate to ask.

Threats happen. And so do people who insist that they know what I am or was thinking or experiencing better than I do. But I’ve actually gotten used to both of those things. The people doing them have unwittingly done me a favor by desensitizing me to this kind of cruelty. Sort of like what Donna Williams said at one point, that I quoted in this post:

I used to be intense about precision. The media knocked that out of me. The way I am talked of, advertised, packaged, pulled apart, even heralded and praised, has taught me to give in about my insistence others must be precise in their representations of me. All I need to know is that I know me… and maybe those most personal and closest to me. But I had to learn to let them see me through their eyes, their feelings, their structures too. Anyway, the more strangers describe me through their own baggage or are way off mark from who I am or how I work, the more they have helped me to dearly value those close to me… and that was something I was very aloof about before. So I thank those who ever portrayed me wrong. You helped me immensely. What can make us crumble, can often also make us more whole… its a matter of focus- self as a victim of crappy experiences versus crappy experiences as an indicator of what’s needed or how great other stuff is by contrast.

Gossip isn’t you and it isn’t yours unless you created it directly by your own hand. If it’s not yours, you can’t control it and time is worth everything. Change what you can but also learn that giving up isn’t giving in. Learn to say ’so what’, ’so bloody what’… then get on with it.

I too deal with diffucult situations like you described… I don’t work at a school but I know someone witth autism pretty well – I help their mom take care of them while shes at work and when their angry I don’t know what to do….. they get very violent towards me(other people) and they break things …. I have had bruises up and down my arms from this and when people ask where i got them…… I don’t know too many other autistic kids like this and I dont know what is going to happen if this conttinues into adulthood for this young one… they are so sweet 99% of the time but that 1% the angry, mad, frustrated part is just plain awful. I wish I had the answers to how to make this particular behavior stop completely……how can an autistic person learn to channell their anger in a different manner cause this is about the only thing that I don’t think is acceptable…….for anyone to do…..

To “Me”: Obviously I don’t know the child you work with so it’s hard for me to conjecture. And I also should hasten to clarify that I’m no expert in autism, nor am I autistic. But just based on my readings: how certain are you that this is anger you’re seeing versus something else that could be misinterpreted as anger? For example, “melt downs” can often be mistaken for anger but have nothing to do with it. What looks like an angry tantrum could sometimes be an instinctive or involuntary reaction to being totally overwhelmed with just too much stimulation to deal with. (Remember that some autistic people are hyperacustic, for example, which means they hear more sharply and clearly than other people–so a noise that you barely even notice can be very aggravating for them. Ditto, for some autistic people, with visual stimulation including light and tactile sensations.)

You may want to click on “meltdowns” under “categories” to explore some of what Amanda has said on that topic. Also try exploring other blogs by autistic bloggers to see what they say on the same topic.

Of course, autistic children do sometimes tantrum just like any other child. But it can be important to try to distinguish which it is. Because if its actually overstimulation, then strategies such as a quiet room with dimmer light, clothes with no itchy tags, etc might help.

I just wanted to say that I think you are a truly amazing, special person. I am going to college to try and become a special needs teacher. I want to change the way things are for special needs children. I don’t think there is anything that any person, can’t do. You are only just at the begining of proving how wrong the worldis with it’s “gray area” & stereotypical viewpoint of what special needs people can or can’t do. Thanks for being you! If you have any advice at all for me I would be grateful.

Sean Bezdiceksays:

March 1, 2008 at 4:52 pm

Amanda, I don’t want to sound trite, but your existence has inspired me. My son Salvador, who just turned 3, has been diagnosed ASD. He does not speak yet. After much research into the autistic condition, I have concluded that NT could also be considered a spectrum disorder; not much orderly about us. I have read various websites with your commentary indicating how you cannot possibly have insight into every autistic person’s mind, but I still have to inquire out of the love for my son.

I never want to be imposing or domineering on my young son, and now I cannot help but think that too much speech, OT and PT can be imposing despite our best intentions. The truth is that we are not connecting with our son completely, and we want to have a consistent two-way communication in order to know we are doing right by him. I just want him to enjoy himself. I accept he is on his own path, and I don’t want to inhibit his growth.

He shows great affection for us, so that is a sign he feels loved and doesn’t have any dissent toward us.

Do you recall your early years and how you first established intentional communication with other humans? As you have stated that you are consistently interacting with your environment, and I am sure there are many subtleties that we must learn from our son, but what would be a strong indicator that his actions are intentional communication and not just a reaction to the stimuli in the environment? Also, how did you learn to read? Was it in a traditional setting?

I know I have asked a lot, so any response would be greatly appreciated.

I learned to read by being hyperlexic, which basically (in my case) means that I learned to decode words early in life but had trouble with receptive language, both written and oral.

I learned how intentional communication worked by going through the motions of language. At first, I didn’t even understand a lot of the sentences I had learned to repeat. As I got older, more and more comprehension and actual communication crept in to both speech and writing, although it was never 100% or even close to it. My experience was a lot like a couple of the other people who read this blog, the ones who talk about speech being seen as a puzzle.

I gradually got to close to 100% communication in my expressive language (although I’m not sure I’ll ever get all the way there with receptive, at least not in any immediate sense), and I actually think that the losses I began to experience in speech again after awhile (with, for instance, cutting out rarely when I was 12, often enough to be in accommodations letters by age 15, and pretty much constantly by some point in my early twenties) were possibly my brain making more room for the sort of comprehension that is necessary for fuller communication. When I spoke, I found it very hard to understand just about anything, because speech took up so many resources and was so painful and taxing on both physical and cognitive levels. Speech obscured my thoughts and personality more than it revealed them.

Basically, a whole lot of things I went through the motions of for ages before anything sank in, which could be quite confusing to people on the outside watching.

These experiences are mine, though, and I’d recommend reading Please don’t take me as typical as well as a lot of other stuff here. You’ll get a lot more details on the particulars by reading through my blog.

And I might be very much unlike your son. I feel very uncomfortable when giving advice about people I’ve never met, because while some things are probably common to all autistic people, our expression of those things is so varied that we can even appear opposite in many areas (like me and my brother, both autistic, almost polar opposite in some areas).

Also, if you want, I can point you at books and other writing by autistic people. If you tell me a topic you’re interested in reading about, I’ll see about recommending books, and I’m sure other people here would be happy to as well. This is because describing autism, while it happens on my site, isn’t always the main focus, but many autistic people have dedicated entire books and websites to that topic. I know most of the books because I’ve been collecting them in an attempt to catalog them (although I’ve been missing out on most of the recent ones). And if you give a topic, I can probably find some autistic person who’s discussed it in depth. And of course you can read through my blog, because I write about a lot of these things in more depth, and many of my readers are autistic or otherwise neurologically unusual and we all go back and forth about our experiences on here a lot.

One big difference can be, for instance, a lot of autistic people are almost the opposite of how I developed, with trouble with both expressive and receptive language, but in their case there’s more trouble with expressive than receptive. I’ve got more with receptive than expressive, which is common in hyperlexic autistic people, but not all of us are hyperlexic. Another difference is what Donna Williams describes as the difference between “taming dysfunctional language” and just having language develop more slowly. I had the “dysfunctional language” problem more than just the slowness problem when it came to expressive language, and even in writing there’s some serious language-wrestling to do because of that at times. But many autistic people develop language in a typical order, just slower than usual.

Susiesays:

March 2, 2008 at 4:48 am

Working with Severely Handicapped students at the state school has been an enormous adventure for me. I have developed rapport with many just because I have approached their spirit rather than their mind or body. Amanda, you have a lovely, brave spirit. Thank you for speaking out.

Jennifersays:

March 5, 2008 at 8:05 am

I’ve just stumbled across you and I was so blindsided by your video about your language I was compelled to come here and comment on your blog. I have a child, a daughter, two years old and “normal.” She displays no indications of any cognitive or developmental disability (i.e., I am not writing you for advice). I was bowled over by what you are communicating because life as a small child is quite the same as being under the types of control that you describe. Her feelings are just as valid as mine, and yet sometimes I treat her as though she were a doll – denying her, telling her No, just picking her up and putting her elsewhere if she is somewhere I don’t want her to be, making her put her toys in a certain area of the house and not allowing her into other areas of the house.

Granted, it is my job as her mother to keep her safe until such time as she learns how to keep herself safe. But why are we, as parents, so conditioned to say No, to arbitrarily impose limits, to not allow what we don’t “feel like” allowing, out of some feeling of inconvenience to us?

Your video reminded me (I say reminded because this is something I’ve been working on already, to respect my daughter’s autonomy and her desire to put nonfood items in her mouth to taste them, to roll in puddles to feel the texture of mud, to bang things against metal to get the satisfaction of a clanging sound, or a vibration, or to do whatever else she wants to do in order to get a whole-person sense of her world) . . . your video reminded me to step back, to allow my daughter to learn and to interact with the world how she wants to, not by some arbitrary set of rules I follow because I was raised by people who followed them because their parents raised them to follow them.

What we do as “traditional” parents raising “traditional” children is to squelch every ounce of discovery and creativity out of them in favor of the dubious goal of interacting with society in a “normal” and “acceptable” way. Why can’t our children taste a pen? Why can’t they rub their face in a book until they really, really know what a book feels like on their face?

So I suppose I’m really just writing to say you inspired me to redouble my efforts to be a parent who makes it possible for her daughter to meaningfully interact with the world, in every way possible.

I had not come across the terms ‘expressive language’ and ‘receptive language’ until I read them on this blog, and in other writings by autistic people. I didn’t see those terms when I studied for a degree in linguistics in the early 1990s.

Having looked in the indexes of several books on language and linguistics, the only definitions of expressive and receptive language I found are: 1) Expressive language as any use of language which shows or affect’s a person’s emotions. It is also called emotive language. 2) The expressive power of language: its ability to convey meaning. 3) As describing a specific language impairment (SLI). Aphasia is commonly classified into expressive and receptive types. Expressive aphasia is also called Broca’s Aphasia. An Encyclopedia Dictionary of Language and Linguistics defines it as “characterized by effortful speech, with problems of word finding and disruption to the grammatical system.” A feature of Landau-Kleffner syndrome is impairment in expressive and receptive language. But otherwise than used in 1) and 2) above, I have not seen the terms expressive language and receptive language used outside SLI.

Besides the communicative and comprehension functions of language, there are its artistic and aesthetic aspects. Such as the beat and rhythm of poetry; listening to words, not for understanding, but for the beauty of their sound whether spoken, chanted or sung; the shape of letters in different alphabets; artistic arrangement of words on a page; calligraphy.

My receptive language is better than my expressive language.

Stefansays:

March 7, 2008 at 3:01 am

Philip: It’s not surprising that there isn’t much information about the distinction between expressive and receptive language other than in a context of impairment, because people “normally” learn both together. Most people would have trouble even imagining having one without the other.

Momsays:

March 7, 2008 at 5:10 pm

Young children before they speak have a very large receptive language and their expressive spoken language starts growing as they mature…Dogs and most other pets of course do not have the physical ability to speak our language but can have very large receptive languages..Both very young children and pets without the ability to speak are still able to communicate with body language…We just have to be willing to listen and learn what they mean.

I enjoyed reading Phillip’s reference to the artistic and asthetic aspects of language..We have

a family member and a new friend who have a way of

pulling archaic words off dusty shelves and flinging them headlong into everyday conversation..It is such a treat to hear these words once again. Some people too have such melodious voices I don’t think it would matter too much what they read…It would be a delight to listen…Tolkien’s readings affect me like this..

Yes, when I use the terms expressive and receptive language, I mean something like this:

Expressive language: Language used in speech, writing, sign, etc. (The language we use, rather than the language we take in.)

Receptive language: Language comprehension of speech or writing.

As far as sheer quantity and type of words go, I have always (when able to speak/type at all) been able to use far more of them than I could comprehend, and I can remember in fact using words without knowing that words had meaning at all, let alone what the words were.

As far as the ability to take my thoughts and form words by them, I have had more trouble with that. That’s always been hit-or-miss at best and non-existent at worst, and it’s changed a lot over time. Adulthood is the only time it’s really solidified into mostly being things I meant, other times have been various percentages in different directions.

In The Lord of the Rings there are poems, songs and other passages in Quenya and Sindarin and other languages of Middle-Earth. They can be enjoyed without knowing their meaning. But, of course, the works from which Tolkien took LOTR were written in Westron, or the common language of Middle-Earth, which was remarkably similar to English.

Musical notation is a form of language. Expressive language in music is the ability to play a musical instrument or to sing. Receptive language is the ability to read music. There have been musicians, such as Jimi Hendrix, who couldn’t read music. I can read Western musical notation but can’t play a musical instrument. Between the ages of 12 and 14 I had piano lessons and could play a few simple piano compositions. My mother was a talented piano player.

discovered you on the website “the Last psychiatrist”describing the unexpressible as you do is an encouragement for me to keep journalling and to stay in the battle.My diagnosis-paranoid schizophrenia.I discovered you,hows that for luck!

best,

bev

Jean-Lucsays:

May 18, 2008 at 4:48 am

Hi-

I’m sure that you must have people commenting like this all the time, but I just wanted to let you know how amazing I think your writing and videos are. I got really interested in so-called ‘radical disability theory’ sort of recently (through trans feminisms, writings on intersex, gender, bodies and embodiment etc.- (I’m just graduating college, my senior project was about transgender and transsexual embodiments). Your work is some of the most compelling and inspiring stuff I’ve encountered, and it definitely makes me want to devote a lot more of my time to thinking about ability (whether ‘academically’ or otherwise..). Anyway, Thanks- looking forward to reading more of your entries.

-Jean-Luc

ps. I totally bought a copy of A Wrinkle and Time the other day to reread- It was great to see that you quoted from that.

[…] offers another description that’s eerily close to what I’ve experienced in her “Why It’s So Hard to Write Directly About My Life”. Her writings have made me feel less crazy overall, seeing someone else who’s gone through […]

Thank you so much. Your writing and courage is more beautiful and hope-inspiring than anything I’ve ever read. I hope I can help get your message out there too if I get into health/social research. The truth will set us free.

Dunnosays:

October 26, 2008 at 2:38 am

Thank you :) You made me cry and i wish i could, more often, get from me the very same courage it took you to write this

Love

Tinasays:

November 24, 2008 at 5:36 am

Thank you so much for sharing and for being brave. I am very glad you wrote it. Though I have never been institutionalized nor am I autistic, I did have an abusive home so I can empathize with many of the things you wrote, even though my situation was so different from yours. Thank you for writting all that you wrote. May you be blessed with all good things.

Moghssays:

March 27, 2009 at 12:23 am

I need to thank you for writing this. I thought I was the only one with the voices that said, “this didn’t happen to you, because things like that don’t happen” — Even when, obviously, those things had happened, and I had witnesses to them. I don’t have any bold and encouraging statements for you, but thanks for reaching out and letting me know it’s not just me.

Shiisays:

April 25, 2009 at 7:35 pm

This post is stunning. It made me cry. Thank you so much for sharing the undeserved pain of your life with the world. I think people will understand autism a lot better as voices like yours become public.

rosssays:

November 5, 2009 at 4:33 pm

I want to thank you so much for writing this. I am too austistic and have struggled with this most of my life. Trying to process information, not being able to move my eyes or make appropriate eye contact at the right time. Feeling things at times people can’t explain. Sensory being so off I feel like I’m in pieces. I get scared to look at people because I fee they will see me staring at them and I can’t tell what facial expressions I’m showing to the outside world without looking in a mirror and memorizing that situation with the way I looked then. It’s like living your life in a dream

rosssays:

November 5, 2009 at 5:03 am

To continue where I left off. I can totally relate to you on how frustrating it is to be this high functioning with Autism and you are not alone. Were just alone in our own worlds and other people can’t really see it. So many people can tell you look so normal and that you understand it like everyone else but you don’t. You see it from a whole different perspective and feel things differently. It’s not that your seeing things or crazy its the angle in which you see it from a whole different end and like being a sleep when your a wake because of reprocessing old information as your trying to move on. You know when your asleep because you don’t worry when your dreaming and when your awake you worry about every little thing and feeling and what it means. I don’t know if you tried different therapies like supplementation,exercise or some other speech therapies. I know that the supplements that I am on are helping to declutter some of the past information and to process things more clearly but what is so frustrating is that its hard for people from the outside to notice much changes and I sometimes look like I’m getting worse but I know I’m getting better when I can focus on less things and relax with it. I really feel this is what people with severe autism who cant speak are going through and can’t communicate about it.

[…] In both cases, they are telling you what you should feel, and insisting that you put on a performance to their specifications, on demand. They feel entitled to decide what your reality is, and substitute their own version. They have no right to do that, even when it’s ostensibly for your | own good. […]